Our very first chapter book!!

Michael actually read an entire chapter book to me! In two sittings, no less! He loves the kindle so much... I can bump up the font size so it's easy for him to read. So, we read the first book in the Magic Treehouse series. I'm hoping we can read the next one soon. It has to be his idea, but I'm hoping to drop a few hints.

When I was growing up, I always had my nose in a book. It was my way of escaping into my own little world. I really want Michael to be able to enjoy books as much as I always have. So, baby steps and maybe we'll get there. Who knows, maybe he'll need his own Kindle one day.

It was a Merry Christmas!

This was the best Christmas since Michael was diagnosed with autism. The first year he actually cared about opening presents, and was truly thankful for the ones he got. I was so happy for him and proud of him at the same time.

I constantly hear people talking about their kids only caring about Santa and presents, and I have to admit that I was jealous. Michael has always enjoyed spending time with family, and even understands all the players in the Nativity. I am grateful for that, since those truly are the most important aspects of Christmas. But, Santa and presents are such a part of being a kid that I hated him missing out.

He still got overwhelmed quickly with all the presents (my family is very generous!) and the activity associated with a family event. But, it was so great when he volunteered to 'be Santa' and pass out the presents. I was amazed when he was able to read names on packages and undersand that to Mom from me meant Grandma, and Joan meant Aunt Joan, etc. I was so happy, and so proud!

So, we ended up binging home a few unwrapped presents because he just couldn't handle opening them in PA, but they are all opened now. He has two big boxes left from Santa that came to our house. He wants to wait to open them until he's had time to play with some of the other toys. That counts as self-regulation, right? If only I had some of that!

Catching Up

There have been a few things I've been wanting to do for months now - post to the blog more often, buy a Kindle, and read Kim Stagliano's book, All I Can Handle : I'm No Mother Teresa: A Life Raising Three Daughters with Autism. So, I'm finally catching up!

My new kindle arrived late last night. Who knew UPS delivered until 9pm during the holidays? I had been anxiously awaiting it's arrival, so I have to admit I was a little less than happy to wait so long. I guess patience has never been a strong suit of mine.

Anyway, it arrived and I tore into it. Before I could even figure out how to turn it on, Michael was in my lap asking a ton of questions. Was it a computer? What's a book reader? Does it really have books inside? I told him I needed to buy a book and he scooched over an inch or two so I could move my hands.

The very first book I bought was Kim's. I'd been wanting to read it since it came out, but I really wanted to wait for the Kindle. Now I had it, and the book was downloading. I was finally happy and excited.

You might know that Michael hates to read out loud to us. Absoulutely refuses to do it unless it's forced homework. Last night, he read the first three pages of the book out loud to me and Steve. I was laughing at Kim and crying with joy to hear Michael read to us. (It was rather surreal to have him read a book to us about dealing with autism, but if I focus too much on that point, my head will explode.)

After he decided he had read enough he wanted to know what other books we could read on it. I told him I didn't know since I had just gotten it. I think he inherited that lack of patience from somewhere. This morning, the first thing he did was ask about the Kindle. I told him we could look at it more after school today. Who knows, maybe this can be the start of us reading together again. I can't tell you how happy that would make me.

As for Kim's book, it's everything I was expecting it to be - funny, charming, and right on point. It is so nice to read her book and 'get' every word on every page. I know her life is vastly more complicated than mine, but she makes me feel like I have a sister up north. If you haven't read the book, I'd highly recommend it.

Now, enough blogging, I have a book to finish!

Holiday Recipes

For Thanksgiving we decided to experiment with a new recipe for cornbread, and then cornbread stuffing. Both worked wonderfully! The cornbread actually tasted as good as any 'regular' cornbread I've ever had. Steve liked the stuffing so much that he wants to make more. That's never happened! So, here are the two recipes. If you try them, let me know how it works out?

Holiday Corn Bread
1 cup GF Flour - Baking Mix
1 cup corn meal
½ cup sugar
4 tsp baking powder
¾ tsp salt
1 tsp xanthan gum
1 tsp honey
1 cup milk substitute w/ 1 tsp lemon juice
1 tbsp egg replacer with 1/3 cup milk
1/3 cup Earth Balance SF margarine

Whisk together all dry ingredients in mixer. Add remaining ingredients and blend together on low until combined. Beat 10-30 seconds on medium/high speed until smooth and fluffy. Do not overbeat. Pour into a greased 9 inch square baking pan. Bake at 425 degrees for 20-25 minutes until golden brown and a toothpick comes out clean.

Holiday Cornbread Stuffing
1 recipe cornbread, cut into small pieces
1 medium onion, diced
Olive Oil
2 lb loose sausage
2 tsp sea salt
1 tsp garlic powder
½ tsp celery salt
1 tsp onion powder
2 cups of all natural chicken or turkey broth

Sautee onions in olive oil, add sausage and cook until browned. Add in spices. Mix all ingredients with the croutons and bake at 375 until firm and beginning to brown, about 30 minutes.

The baking mix we use is from Cybele Pascal's Allergen Free Baker's Handbook. It's a wonderful book of recipes, but, better yet, the flour mix translates to almost any recipe. So, we are able to use her mix and create our own recipes.

Baking Mix:
4 cups superfine brown rice flour
1 1/3 cups potato starch
2/3 cup tapioca flour

Kinect Adventures

I've seen a story all over the web about how a two year old with autism was able to really enjoy playing with the Kinect, and thought I'd blog about our experience. We received (as a wonderful pre-Christmas present) the Kinect the day it came out. Steve set it up that day, and Michael was already playing before I came home from work.

It was so cool how he noticed the box and figured out it was a video game, before Steve even said what it was. He supervised the entire setup and couldn't wait to play. Michael is pretty technically savvy, and enjoys exploring different options on the typical game controller. At first, it was hard for him to understand that he didn't NEED a controller for this game. He caught on very quickly though.

At first, it was pretty intimidating for Michael to figure out how to track the screen, stay in the game space, and play the game all at once. Now, a week later, he can turn on the game, use the voice commands to start up Kinect, and has even scored a gold on a few levels.

But, even better, he wants to share the fun. He's invited his Grandmother over this afternoon to play. And, he called a friend of his from school to invited him over this weekend! He never calls to invited people over! I am so looking forward to watching him explain how to play to both his grandmother and his friend.

On the negative side, I don't think Grandma will be able to play with him. The game requires a lot of physical movement (jumping, stepping side to side, matching poses, etc.) The requirements are great for Michael who still has a lot of issues knowing where his body is in space, and gross motor movements. But, for someone who is a little older with occasional balance problems, the game really isn't appropriate. But, I am sure they will have a lot of fun together.

I'll have to report back on Monday how it goes. Anyone local want to set up a play date?

We have a trailer!

I am so excited and proud to announce that we finally have a trailer for our movie!! Please watch the trailer here and visit our facebook page here. We have put so much work into the movie, I really want as many people as possible to see it. Please watch the trailer and leave a comment? Thanks!!

Proud of my guy

These last couple weeks have been pretty busy, with lots of great days, and a few more difficult ones thrown in. But, overall, I am so proud of Michael. He really is turning into a nice little kid.

We have been taking him to KEEN, which is a group play/exercise time. They have one-on-one helpers, usually teen volunteers, to help them. Last week, his helper commented on what a polite kid he is. I was just beaming. It's so easy to focus on all the things we still need to work on, and the occasional temper tantrums, that I lose sight of the great kid I have most of the time.

So today, I am going to be happy that I have a kid who will happily help me unload the dishwasher, says please and thank you, and genuinely wants to help others be happy. That is what I choose to focus on today!

Finally...

Many years ago I was told that if we just got Michael's gut healed, he would be more willing to eat new foods. We started the diet and got out all the things he is allergic to over two years ago now. In the last couple weeks, I've noticed some startling things:

Michael is asking for new foods
He ate an almond butter and jelly sandwhich
He eats and LIKES broccoli and cauliflower
He nagged Steve to make him chocolate chip muffins

This is the child that never cared about food and hated to try anything new. Now, he's not exactly eating a full meal of new foods, but he's getting adventurous. He's actually mixing textures (daiya cheese sprinked on a burger!) and liking things.

I never thought this would happen. So, even if it takes a couple years, it IS possible for a picky eater to change!

KEEN

I have been meaning to write a post all week about KEEN. It's a wonderful group that provides one to one support for kids with all kinds of disabilities to have two play sessions a month. And, it's a drop off program.

Michael had his first session last weekend. I know he was mostly excited because he saw the elevator, but I believe he really enjoyed the session. He's been talking about it, and telling us that he gets to go back in October. It's great to see him so excited about something new. And, I have to admit, having an hour to myself once in a while is a very nice idea!

Seeing through Michael's Eyes (sortof)

Last night I woke up incredibly nauseous. It's such an unsettling feeling to know that you are about to run to the bathroom, and there is nothing you can do about it. Steve was still in his office working, so I asked him to keep me company while I waited.

I noticed that even though I really wanted his company, I had few words, and looking directly at him was nearly impossible. I guess when you are so focused on keeping yourself 'together', you just don't have any extra energy/focus for things that are normally easy.

At one point, Steve offered to make me a cup of ginger lemon tea. (What a wonderful man!) It took a few minutes for me to register what he was saying and to then get out a small 'yes to tea'.

Thankfully, there was only one episode and the tea was able to settle my stomach after. But wow, it's so hard to explain the feeling of revelation when I realized that sometimes you just CAN'T talk or make eye contact, or anything else. You just need to put all your energy into breathing.

I think I'll be a little more patient with Michael today!

Signs of maturity...

I know that Michael is 8 years old now, and he should be able to do many things independently. But, he just hasn't been able to. I've noticed in the last month or so, he really is making huge progress. It started out with him picking his own clothes for school, and just little things here and there.

Last night, he wanted a bath so he went to his room and got his nighttime clothes ready and brought them into the bathroom. If I give him a time when the bath is done, he can watch the clock and let me know when he's ready. He still can't dry himself off effectively, but he can dress himself after his bath and get back to playing. Baby steps, but it makes me happy!

PANDAS?!

It looks like Michael might have PANDAS. We've had him on antibiotics for a couple days now, and boy is it taking a toll on him. His tummy was so upset and he was so wiped out, he took himself to bed at 7 tonight! I sure hope the antibiotics help, and that he is back to himself soon. For now, I'm just a tad stressed.

So far, so good

This has been a pretty good week so far. Michael is settling into his school routines, I'm settling back into work, and Steve has been getting a lot of his work done. I loved vacation, but it really is nice to feel more settled.

I went to a TACA meeting last night. It was all about the GFCF diet. Even though we have been doing the diet for more than two years now, it was still nice to get a few tips and talk with other parents doing the same thing. It is just so relaxing to talk with people who 'get it' and really understand what you are doing with your child and why.

Back to School

Michael headed back to school today, much to everyone's relief. It was nice to have a break, but we all missed the structure of our school routine. He was a little nervous this morning but actually managed to pull out a fantastic day. Only one reminder for the whole day, and all his points! Yes, I'm very proud of him.

I'm also trying to get into an after school routine that ensures homework is done early. Today he was really hungry when he got home so he had an early dinner and then homework. Then, lots of playing and relaxing. I just hope the rest of the week goes as smoothly!

Fruit picking

We went on a playdate yesterday with a friend of Michael's from school and his family. It was really nice and I think the kids had fun. The parents had a lot of fun too since we went apple and berry picking. (OK, maybe Steve didn't have as much fun since he ended up carting Michael around in a wheelbarrow.)

I was suprised that Michael seemed to enjoy picking the apples and promised that if I made a pie he would eat it. I didn't really believe him but I made the pie anyway.

So, we made our very first gluten/casein/soy/egg free apple pie. I was shocked that it actually browned, since so many of our creations come out of the oven looking the same that they went in. It was really funny because Michael was nagging all afternoon about when the pie would be ready and when he could eat it.

So, after much fussing, we cut into the pie and Michael had his first taste of apple pie. He's not neglected, he just never wanted to try before! He wasn't all that impressed and I ened up finishing his piece. The filling was pretty good but the crust still needs work. If I ever get it right, I'll let you know.

Of course, today's challenge is to make a peach/blackberry crisp. I have much more hope for that one!

One step forward..

Today was a pretty good day overall, but the end was pretty depressing. I understand that Michael still has huge, enormous sensory issues, but I just don't understand how he can throw a tantrum over watching more doors after spending half an hour riding elevators and watching doors. Lately, he's been able to express his desire for the one thing that will let him leave happily(one more ride, playing a game when we get home, etc.). Today, he just couldn't. So, he dropped to the ground and screamed.

I'm pretty much over being embarassed by the tantrums, but it still depresses me to see him lose control. In some ways, the better he gets, the harder it is to see him lose it. So tonight, I'm just going to be thankful for the days he can hold it together and not focus on being disappointed when he can't.

Starting Over!

OK, summer is quickly ending and it's time to start thinking about getting back into a routine. So, my new resolution is to get back to posting here. I miss sitting at the end of the day and reflecting on it. Some days are great, others not so great, but it's nice to keep track.

Today has been a mostly great day. We needed to take Michael for blood tests this morning. (I say 'we' in the most general sense of the word. Steve and Dan (my BIL) actually took Michael because they can only handle one traumatized person at a time.) Anyway, it has always taken at least two people to hold Michael still for the draw. Now that he's gotten so much bigger, it's pretty much impossible.

Today, Michael started out fussing and crying and then realized he just had to do it. He told the phlebotomist to 'take the blood out of my arm' and actually talked with her during the process! I couldn't believe it when Steve told me about it. But, it really sank in when I saw how proud Michael was.

Michael has struggled all summer with self control and behavior. It's nice to think that maybe he's finally making progress in holding it together and not melting down. Now, I'm sure that we still have tons of meltdowns ahead of us, but I am really taking this as a positive step.

Of course, after we got home Michael wanted to go ride elevators. It's his favorite treat in the world. And one that no one else likes. But, we had enough guilt that we took him to the mall and let him ride different elevators for over an hour. So, he was thrilled with that and still proud of himself for the rest of the day. I like good days!

Treat the child not the numbers!!

OK, I hear that phrase a lot from biomedical doctors. It always seemed fairly obvious to me. Until yesterday. Michael had his 8 year old check up with his regular pediatrician. He weighed in at 56.6 lbs and 50 3/4 inches. (49th and 55th percentiles according to my math) I'm guessing that the nurse charted him incorrectly because the doctor was all concerned that his weight jumped to the 65th percentile.

We are talking about a child who has always been underweight. You can still see his ribs when he breathes in. I asked the doctor how we could possibly need to watch his weight when he is so obviously skinny. She said that obesity is a big problem and that doctors have to watch children carefully. I was absolutely floored. (Did I mention those ribs???) So, I came home and did my own math and felt better that he didn't suddenly jump several percentiles, but really question how such a smart professional can be so blind!

Hurray for Captain Underpants!

Michael taught himself to read shortly after he turned 3. Since then, he has been able to read anything you put in front of him. Teachers, therapists, doctors, were all convinced that because he couldn't answer questions about what he read that he wasn't understanding it. This week, we finally got proof that he does understand!

My brother-in-law had given Michael a set of Captain Underpants books for Christmas a couple years ago. Michael had not been interested in reading them because of his overall fear of reading. I guess that he was so stressed about all the comprehension questions that he just decided not to read at home anymore. Every time I tried to suggest it, he just put the book down and wandered away. Between Steve and me I knew he had to have a reading gene in there, so I have been (trying to be) patient about it.

Last week I came across the boxed set sitting lonely on a shelf. I realized that it had a sound effect whenever you opened the box. Michael can't resist sound effects. So, when he was in another room, but could still here, I opened the box. Pitter patter of tromping feet. It took another several days before he would open any of the books. But, this week, a major breakthrough. Michael actually explained the books to my mother-in-law! She had never heard of Captain Underpants and was curious. If Steve or I had asked about it, he would have run into another room. But, because it was Grandma, it was OK. Based on his explanations, we knew he understood everything he read. And, better yet, he asked for the next four books in the series. Life is good! (OK, not exactly Watership Down, but I'll take it!!)

I am going to explode!

We got back from Autism One very early this morning (around 3:30am). When I went into our room, I noticed Michael sleeping in the middle of the bed. I guess he figured we weren't using it, so he might as well camp out. We tried really hard not to wake him, but he woke up when we got into bed. He was genuinely happy to see us. We got several "I missed you guys!" before we finally got him back to sleep. He was still too excited to sleep well and was up several times before getting up for real around 6. Poor Dan! But, it was nice that he really did miss us, and was able to express it.

Then, we went to Whole Foods to do some catch up shopping. Normally, it's a terrible idea to bring Michael with us, because he likes to go up and down the aisles, watch the doors, anything but shop. Today, he actually helped push the cart and let us get what we needed. Very nice!

So, it's been a fantastic day, on top of a phenominal conference. I'm going to try to make sense of my notes from the conference over the week and share them. Plus, we got to do a lot of interviews for the movie, and things are going great. I'll be updating the movie sites this week as well. Dunno where I will find all the energy I'm going to need this week!

Autism Healing and Hope - the MOVIE!

We are either totally insane, or extremely inspired. Steve and I have decided to make a documentary for parents of newly diagnosed kids. We started filming at the DAN! conference and hope to continue at Autism One later this month. One of the things that hurts the most is when a parent tells me that their doctor thinks autism is hopeless and that treatments are a sham, not to waste their time or money.

We have seen with our own eyes the difference that treatment can make in our son. Not every treatment works for every child, but there is a lot of scientific evidence that there are things you can do to help your child. Even if the "only" results you see are better sleeping or less tantruming, who among us whouldn't love that?

So, we are interviewing top doctors and therapists to briefly describe what treatments are available, and which kids they have the best results with. If you have any ideas for someone perfect to interview, please send a comment. If you want more information about the movie, please look here.

Apology and good info!

I am so sorry for being away from the blog for so long. Between allergy season, the DAN! conference, and general life, things have been nuts. Plus, we have a special project that I'm hoping to announce this week. I know it's a tease, but trust me, it will be worth it. (At least in my opinion!)

The news that I absolutely had to share was that Generation Rescue is offering grants to help families who are just starting biomedical treatments. Applicatins are being accepted now until May 31, 2010. I am hoping that most of you won't qualify because you are already doing biomedical treatments with your child. However, if you haven't started, or have a friend who is thinking about it, now is the time!

Two Years Today

It's hard to believe that Michael has been gluten/casein/soy free for exactly two years now. (We didn't find out about the egg/peanut allergies until later) In some ways it seems like the blink of an eye, in others, it seems like forever. Is it a ton of work? definitely. Is it all worth it? More than definitely.

When I think back over the last two years, Michael has made so much progress, and come such a long way. He is a happy, engaging kid. He still has a lot to work on, but he's with us, we are starting to have conversations, he no longer has major GI issues, and life is generally good. I wouldn't go back to the spacey, GI issue filled days before the diet for anything.

I do have to say that it is so much easier to follow the allergy friendly diets with all the new resources that are available. We make almost everything from scratch, with the help of great recipes and a ton of patience from the head baker (Steve). I don't know what I would do without amazon, the common market, and whole foods. Plus, I have actually learned to cook. Before I could pass off a few recipes, but now I can look at a recipe, make the substitutions, and come up with something yummy much of the time.

So, it's been a long two years, but I am really looking forward to the next two, and all the years after.

HANDLE, Cranio, Enhansa

If anyone asked me what my three biggest "wow"s would be with Michael, these would have to be them. We have done so many things with him that have been miraculous (Tomatis, diet, etc.), but these are current and making a huge impact on him now.

We had Michael's HANDLE followup this afternoon. It is so remarkable for me to think back where he was last year when we started, and compare that child to the Michael we have now. Today he was interacting, asking questions, being polite, so many wonderful things. Last year he was shy, acting out, impatient. He still has a long way to go, but I am just so thrilled with his progress.

I think the biggest things he has gained from HANDLE have to be better vision, self-confidence and body awareness. He has always struggled with getting his eyes to work together, making distance reading and close work like writing extremely difficult for him. Now, when his schoolwork comes home I can actually read it! And, no more throwing pencils to get out of writing! Also, he really seems to have a much better idea of where his body is in space, letting him freely jump, run, and just be kid. I love it!

I think the CST works so well with HANDLE. As his therapist has been working on his frontal lobe and the two hemispheres of his brain working together, we are seeing huge gains in self control, expression, curiosity, and pretend play. I'm not 100% sure what to attribute to HANDLE and what to CST, but together, they make a whole new kid.

Underlying all these gains has to be the enhansa. Now that Michael is free of the chronic candida infection, his tummy problems are gone and so is his OCD and most of his aggression. I can see every day that as his body heals, his brain does too. It is hard to understand how yeast can do so much damage, but boy do I believe it! Plus, the anti-oxidants have to really help in reducing inflammation and just making him healthier.

So, after much introspection on the way home, I have to rave about my favorite three 'wow's -- at least for today!

Good, but different....

Michael finally has an imaginary friend... but it's very different. He has a toy box that he calls his treasure chest.. but now it has a name. So he is putting his treasures inside "Matthew" and carrying him around from room to room. Not quite sure what to make of it, but it's definitely more imagination than we've ever seen. So, I'm really kinda happy about it!

I am guessing that I'm pretty content with things these days. Michael is happy, doing well in school, and making real progress. I'm actually finding time to find the house and do projects I've been putting off for years. It's a little hard to fathom, but content is good, right? I mean, we're still full steam ahead on biomed, and still researching, but I just don't feel as frantic as I have in the past. Of course, now that I've actually typed out the words, I'm afraid I'll jinx something!

Support for Dr. Wakefield

"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres."
-- 1 Corinthians 13:4-7

I was thinking about this verse the other day in relation to Valentine’s Day. In the same day, I saw a facebook request by a friend to send Valentine’s Day cards to show support for Dr. Wakefield. There have been so many blog entries and articles talking about how horrible the decision was, and how the medical and legal fields have been taken over by special interests groups – I don’t really want to rehash that. (If you don’t know what I am talking about, just go over to Age of Autism and read for a while.) I am a firm supporter of Dr. Wakefield and don’t feel the need to go beyond that at this time.

But, when I read this verse, it really put into perspective how selfless Dr. Wakefield has been in his support of our children. To survive the public flogging he has been through, and come out the other end with his dignity and integrity intact, shows his true character. When someone shows so much love for our children, they deserve our respect and appreciation. Thank you Dr. Wakefield, you will never know how many lives you have touched in a positive and loving way.

Valentine’s day is still a couple weeks away – plenty of time to find a card, or help your child make one. If you can, please send them via Thoughtful House.

Dr. Andrew Wakefield
c/o Thoughtful House Center for Children
3001 Bee Caves Road
Suite 120
Austin, TX 78746

Please, vote!!!!!!

It's been a while since I've posted.. so far, this is an exciting, productive year for our family. Michael is doing amazingly well, I'm actually getting some projects done around that house that we've been putting off for years.. and I think we're just generally happy and content. So, what am I begging for?

Chase Community Giving is donating $5,000,000 to charities around the country. But, you have to vote on facebook for the recipients. It is so easy and quick to do.

Why vote for National Autism Association? They spread the word about hope. They have programs to help families in hard times. They have programs to help keep kids from wandering. They are one of my top five autism organizations.

So, if you have a facebook account, please, please, please go to www.voteautismnow.com and cast your vote for the National Autism Association Inc.

Thanks!

Happy New Year!

It's been a crazy but great holiday season. But, I am so ready to go back to whatever passes for 'normal' around here. Tomorrow is back to work, back to school, and back to reality. I'll miss the relaxation from the holidays, but it will be nice to get back on a schedule. Michael has certainly missed that!

But, one last present! Game giveaway has a great free game today, and it's kid-friendly. Let me know what you think?